Recently I had the opportunity to attend part of the New York ReelAbilities Film Festival. The 6th annual event in New York involved all five boroughs, but was based primarily at Manhattan’s Jewish Community Center. The program featured a dizzying spectrum of disability perspectives and concerns on film. It also included talks, photographs, parties and story-telling in presented by The Moth.

RealAbilities NY Disabilities Film Festival, 2014

I liked everything about this festival. Perhaps the best aspect is that individuals with all kinds of issues can come, in real life, and meet other people with similar kinds of concerns. And so might their parents, or spouses and others who want to know, to gain a better sense of the experiences of people with varied physical forms. I don’t know that I could have imagined this kind of event happening, when I was a child or a young doctor.

For this post, I’ll stick to “the Moth” presentations, which numbered five. My instincts tell me not to declare favorites, so I’ll just provide a tidbit about each of the stories:

The first speaker walked onto the stage with just a bit of guidance. He was young, blind, handsome and funny. He spoke of growing up in a suburb. He was assigned chores and minded those. When in his early 20s, he signed up to participate in a program that involved cleaning on Coney Island, the people in charge tried to keep him standing at the edge of the project, to not let him help out in a meaningful way. He felt marginalized. By speaking with the other participants, gradually he entered the workspace. He got to get his hands dirty, doing grunt work with the rest of the crew. Happiness ensued.

Next, a dark-haired, smiling woman who has aphasia – difficulty speaking, casually stood as she told her story. Her name is Yvonne Honigburg, and she advocates for the National Aphasia Association. She described growing up with a sometimes secretive mother, of learning she was adopted, and of searching for her biological mother. Eventually the three met in a restaurant in New Haven, CT. Upon meeting Yvonne’s natural mother, the adoptive mother said something surprising. It ended well.

A woman in a wheelchair delivered the third, marvelous story. Millie Gonzalez has long curly reddish hair. She wore a sequined, shiny top and spoke of how she has always loved to dance. Evidently she has spina bifida, and after years of dancing with crutches, as a child and in high school, she’s learned to dance in a wheelchair. A while back she attended a previous ReelAbilities festival and saw the film Musical Chairs. After the event, upon trusting a man, perhaps the film director, he “twirled” her in the air, or something like that. Her heart stopped, momentarily, for the thrill of it all. It was very romantic. After that, she’s gone belly-dancing and advocating for people with disabilities.

The fourth speaker told of a moving story of her life with severe kidney disease and impaired vision. When she was a child, and the doctors finally explained to her what was wrong, she felt a sense of relief, knowing at least that there was an explanation for what she was experiencing. After some dark times, and dialysis, she received a kidney from her mother. Still, she lacked self-esteem, and hibernated. She spoke openly and vulnerably, about what led her to see the value of living. #uplifting

The final speaker walked on stage and, after a few minutes, mentioned that she had a prosthetic arm. She’d spent most of her childhood, adolescence and college years trying to hide her deformity. She didn’t want to be perceived as defective. In becoming a mother, she realized that her child had certain expectations….I cried, just a bit.

I don’t often write about scoliosis, a health problem that’s been with me since age 6. The problem is that my spine is twisted, S-shaped, and – without the support of steel rods, titanium cages between lower vertebrae, seven or so bolts and a screw into my hip – I couldn’t walk or stand up much, if at all.

Recently, the New England Journal of Medicine published an article on a rare, NIH-funded study evaluating treatment of this condition in adolescents. It’s an odd, semi-randomized trial: the researchers intended to randomize the patients to wear a back brace for at least 18 hours each day, or not. Not surprisingly, they had trouble enrolling young patients from over 1000 deemed eligible; few were willing to be randomized to wear the brace, or not. In the end, they studied 242 patients. The endpoint was whether the kids who wore braces were less likely to need surgery.

How do you know if a child needs surgery for scoliosis? The authors state that “Curves larger than 50 degrees are associated with a high risk of continued worsening throughout adulthood and thus usually indicate the need for surgery,” based a 1983 report. The date of that limited old paper – and a greater point, I might add – is how little evidence there is for patients with scoliosis and their parents to guide treatment decisions.

Anatomical illustration from the 1921 German edition of Anatomie des Menschen (wikimedia entry)

The NIH provides some information on scoliosis, although there’s not much on how common is the problem in moderate and severe forms. Significant scoliosis is far more common in girls than in boys. A lot of kids have a slight curvature, if you look hard for it, and many older adults develop curving of their spines. But the frank, debilitating kinds of deformity caused by an S-shaped spine at a young age, which limits the capacity of the heart and lungs, besides other problems, cosmetics aside, if of unknown frequency. And there’s little by way of hard data to distinguish among braces, surgical methods, duration of casting and other issues. I learned today that the USPSTF doesn’t recommend routine screening for this condition.

The NEJM study stopped early, because the results became clear. Wearing the brace significantly reduced the chances of an adolescent spine’s progression to severe curvature, from 72 percent down to 48 percent. So for the next friend of a friend or colleague’s acquaintance who calls me and asks what it was like to wear a Milwaukee brace as a child, and then to have surgery, I might refer them to this article, which supports the “bracing of adolescents” – quite a summary of 4+ years of my life, before the (brief) traction, surgery and casting.

Surgery for scoliosis is a much lesser and safer procedure than it used to be, but it’s nothing to choose if you can avoid it. When I was 14 years old, the orthopedist told us my chances of dying during the procedure were approximately 0.5 percent. I was good enough at math to comprehend it, and by then had been to enough doctors’ offices to know that he was probably making it seem better than it was. Besides, what were the non-fatal and long-term complications of the surgery? I didn’t ask, but I’ve learned: Many –

Jump to yesterday evening, when by chance I got a front-row seat at Bodycast, an autobiographical performance art or “talk,” with bits of dance, music and neat images by Suzanne Bocanegra. The artist, now in her fifties, has scoliosis and wore a cast for two years as an adolescent in Texas. Frances McDormand, one of my favorite actresses, delivered the layered, piercing work. As Bocanegra mentioned, some people fetishize casting and bracing and putting women in traction and stuff like that, which is truly sick.

“Bodycast,” by the artist Suzanne Bocanegra, at BAM

I liked the show, and I’d be interested to see more of Bocanegra’s work. One of the threads was making order out of curves, art out of irregularities…She’s into tartans, and plaster casts, and art history, and classical notions of beauty. What she represented in Bodycast, as I saw it, was somehow putting different aspects of one’s life in order, and interweaving them, including the flaws.

Life is curved, usually, and maybe it’s better that way. Perhaps that was the Bocanegra’s point, or dot, as she might illustrate it.

The story takes on the perspective of a young man who’s seeing the death of too many of his friends and neighbors from a strange and previously-unknown disease. As much as the situation is disturbing, and frightening, and shattering of the gay men’s barely decade-old freedom to behave as they choose, most of the protagonist’s associates just can’t deal with it. Nor can other, potentially sympathetic officials like Mayor Koch, health officials at the CDC and NIH.

Among the men who form GMHC, in this drama, there’s a mixed crew. Some say they’re embarrassed by the attention the illness drew to some gay men’s behavior. Many stay fully or half-closeted, understandably insecure in their jobs. They worry about discrimination and rejection by families, landlords and even doctors, some who were reluctant to take on patients with this disease. Some of the affected men and their friends, straightforwardly, fear death; others are in plain denial about what’s going on in their community.

The scenes unfold between 1981 and 1984, more or less the time when I moved to Manhattan, lived downtown, applied and matriculated at NYU’s medical school. Many of the first clinical cases, i.e. patients, I saw, were young men with HIV and Kaposi’s sarcoma, one of the first conditions associated with the outbreak and that’s featured in the play – the appearance of maroon or violet-colored, usually but not always flat, often elongate, spots on the skin. The AIDS patients tended to have anemia, either from immune blood disorders or, more often, infection in the bone marrow. As a hematologist-to-be, I was intrigued.

Then and now, looking back, it’s hard not to respect those men’s activism, especially those who, with Kramer, created the AIDS Coalition to Unleash Power (ACT UP). They were impatient with the pace of research and physicians’ protocols, and spoke out so emphatically about their needs: for more research; for prevention and treatment; for easier access to new drugs; and, simply, for good medical care.

The play closes soon in New York; its producers are said to be planning a tour and a London production of the work. Patients and their advocates, of all backgrounds and particular concerns, might take notes.

It’s a simple story, at some level, about a middle-aged woman from south Boston who loses her job. She has a disabled, adult daughter who needs caregiving, and she needs money. She contacts some old friends, and scours the neighborhood for a job. She encounters a once-boyfriend, just for a summer at the end of her childhood, who’s become a doctor with a fancy office and a fancy house and a beautiful wife.

Frances McDorman, in a photo for the MTC

And she’s angry, angry because she’s never been able to leave her community despite, as she puts it, “being nice.” She put her daughter’s needs first and helped others when she could – or so she says, but she was too often late for work at one job and the next, because she was waiting for the daughter’s sitter, or because she couldn’t pay the bill on her car, or for some reason or other unfortunate event, as she sees it, that isn’t quite her fault.

The play’s well-executed, with firm acting and revealing details – like the wallpaper and mismatched furnishings in the woman’s kitchen, and the spotty sportswear the women don when they go out to be sociable. Some scenes take place in a church, where the characters chat as they play “BINGO,” waiting and hoping for a lucky break.

It’s about fate, and responsibility, and assumptions people sometimes make. And it’s closing this Sunday.

Last weekend I went to see a strange, slightly unnerving play, The Milk Train Doesn’t Stop Here Anymore by Tennessee Williams. It’s a sad take on the end of life, and desperation in some lonely characters.

Olympia Dukakis plays an aging, vain, older woman who’s dying of an unnamed condition. She takes morphine injections help her “neuralgia,” and uses liquor to entertain guests and, without success, to blunt her emotional pain. A handsome young man, presenting himself as a poet and sculptor of mobiles, climbs up the hill on which rests her Italian villa.

She’s no fool and quickly learns of his moniker, “the angel of death.” It’s said he has a particular fondness for terminal, moneyed women. Still he is impoverished; he shows up essentially starving and with nearly nothing in his sack; he has not exactly benefited from his exploits.

Darren Pettie and Olympia Dukakis

Dying alone is scary, unbearable. So she lets him in; her fear outweighs the final compromise of being used, and touched, by a stranger seeking something in exchange.

A straight read of the play might make you think it’s the story of a man who flatters older women in exchange for shelter and food. Another take might consider the man’s need or desire to comfort, to reduce another’s pain, which might be genuine while pathologic, and the pleasure he might feel in doing so.

Hard to know what was Williams’ intention in this 1963 work. I found it intriguing.

A medical lesson?

Yes, I’d say it is, especially now as doctors may become as robots. I can’t help but think of a patient who somehow and for whatever reasons alone in the hospital at the end of life, who cannot be helped by a machine. One role of the oncologist or other familiar physician, some might say, is to be there – even if paid, “on duty” if you insist – to hold the patient’s hand when the end comes.

The intimate production, enacted by the small Ensemble Studio Theatre on the second floor of a nondescript building on West 52nd Street, affords a fresh look, albeit partly fictionalized, into important moments in the history of science. Most of the scenes take place in a research lab in post-War London, at King’s College, where Franklin took on a faculty appointment.

Franklin’s story starts like this: She was born in 1920 to a Jewish family in London. She excelled in math and science. She studied physical chemistry at Cambridge, where she received her undergraduate degree in 1941. After performing research in photochemistry in the following year on scholarship, she joined the British Coal Utilisation Research Association (BCURA) and carried out basic investigations on the micro-structure of coal and carbon compounds, and so earned a Ph.D. from Cambridge University. She was a polyglot, and next found herself in Paris at the Laboratoire Central des Services Chimique de l’Etat, where she picked up some fine skills in x-ray crystallography.

You get the picture: she was smart, well-educated and totally immersed in physical chemistry before, during and after WWII. Single-minded and focused, you might say –

Franklin in Photograph 51 wears a simple brown dress with large black buttons straight down the middle of her lithe frame. Her lipstick and haircut seem right, but her three inch heels, even after a few years of experiencing the joie de vivre in Paris, or just being holed up in a research institute there, seem a tad too high for such a pragmatic soul. The lab set is perfect with its double-distilling glassware, wooden pegs on racks, tall metal stools with small, flat circular seats, light microscopes, heavy metal desks with file drawers and a contentious cast of characters.

As this narrative goes, Franklin spurns socializing with most of her colleagues. They find her difficult. She spends nearly all of her time and late hours using x-rays to generate crystallographic images of DNA and making detailed notes and related calculations. Eventually a lab assistant gives her key data, Photograph 51, to her colleague, Maurice Wilkins, who is inexpert in crystallography and cannot independently interpret the structure. While Franklin continues working at a measured pace, refusing to rush into publishing a model until she’s sure of her findings and the implications, Wilkins shares the image with Watson and Crick. They move quickly, publish first in Nature and, later, win the Nobel Prize for the discovery. Meanwhile Franklin leaves Wilkins’ lab and starts a new project on the structure of tobacco mosaic virus. She dies at the age of 37 of ovarian cancer, likely caused or effectuated by the radiation to which she exposed herself at work.

It’s a sad story, but instructive, engaging and very well-done, so much that it’s haunted me for days. Hard to know what’s real –

According to a program note from Anna Ziegler, the playwright: “this play is a work of fiction, though it is based on the story of the race to the double helix in England in the years between 1951 and 1953.” Ziegler refers to several books from which she drew material: The Dark Lady of DNA (by Brenda Maddox), The Double Helix (by James Watson) and The Third Man of the Double Helix (by Maurice Wilkins).

My favorite part is Franklin’s statement at the beginning: “We made the visible, visible.”

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For a (depressing) counterpoint to this play’s version of events, you can take a look at Nobel Laureate James Watson’s 2007 TED lecture on YouTube. “She was a crystallographer,” he says of Franklin, and other things, before delving into his late-life happiness and current ventures in cancer genetics and autism studies.

Now, Old Hickory comes on like a rock star. The story is narrated, in part, by an excitable, graying Jackson groupie who bumps around the stage in a motorized wheelchair. A wild and rattling cast sets the thing’s tone in a startling first number, “Populism, Yea, Yea!” An early review of this musical, toward the end of its early 2008 LA run, cites these lyrics:

Sometimes you have to take the initiative.
Sometimes your whole family dies of cholera.
Sometimes you have to make your own story.
Sometimes you have to shoot the storyteller in the neck.
Sometimes you have to take back the country…

(These words antedate the Tea Party, to which the play vigorously alludes in its current form.)

You get the idea: it’s lively, a bit disjointed and politically relevant. And fun. It messes with the facts, and is tangentially rife with medical topics:

In the play, Jackson’s father, upon witnessing the whoosh and arrow-in-her-back slaying of Jackson’s mother in a backwoods cabin somewhere in South Carolina or Tennessee, immediately and without hesitation attributes her death to cholera. A moment later, he and a cheery cobbler are felled by similar instruments. The future President Andrew Junior, who’s playing with toy cowboys and Indians while both of his parents are shot dead in this life-motivating scene of pseudo-history, refers later to his parents’ deaths from cholera.

Most historical sources and Jackson’s Tennessee home’s current website, attribute the mother’s death to cholera. According to a scholarly review of cholera epidemics in the 19th Century, the disease didn’t appear in North America until after 1831 or so. A fascinating, original New York Times story details the ravaging effects of this illness in Tennessee in 1873, but that would be long after Jackson’s death in 1837.

An unexpected medical writer’s gem of a song, “Illness As Metaphor,” cuts to the heart with a message about blood, symbolism, love and Susan Sontag’s classic essays on the meaning of tuberculosis and cancer in literature and in life. The lyrics of the song from Bloody, Bloody Andrew Jackson are hard-to-find on-line, but you can get it through iTunes, by which I found these words:

A wise woman once wrote that illness is not metaphor.
So why do I feel sick when I look at you?
There is this illness in me and I need to get it out, so when I bleed
It’s not blood, it’s a metaphor for love.
These aren’t veins just the beating of my heart.
This fever isn’t real it represents how I feel…

You can see a Spanish-sung, sickly romantic version on a YouTube video:

I’m not sure how Susan Sontag would feel about emo-rock in general and about this song in particular, but I should save that subject for some intense, future writing project –

A few other medical digs include mention of Jackson’s hepatitis – acquired on “the battlefield,” as he explains to his admirers, syphilis – a killer of Indians and, consistent with the play’s hemi-modern approach, Valtrex – which some of the prostitute-turned government advisees run to get when it’s given for free.

All in all, it’s a terrific play about Americans, Manifest Destiny, populism, anti-elitism, economic frustration, anger toward foreigners, fear of terrorism, emotions and the founding of the Democratic Party.